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Health

The life that happens after diagnosis

Photo by Joshua Earle on Unsplash

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I caught up with Roland Chesters to talk about the book he’s written about being diagnosed with HIV — Ripples From The Edge Of Life.

Why was writing this book the right way to share your story?

It’s not only my story — the book contains the stories of 13 other people diagnosed with HIV, and in some cases AIDS, between 1982 and 2015. I’ve been asked by one of those contributors not to call these ‘stories’ as that usually implies a work of fiction. These are not. They are real life, warts and all.

The book also contains the voices of those who have been around me since my diagnosis. I couldn’t conceive of a better format to include all of those voices than in a book.

Did writing the book help you to work through the pain and trauma of the initial diagnosis and the aftermath?

The process was painful, requiring me to go back to experiences which were hugely painful at the time. But it has also been cathartic and empowering. I no longer have to hide from anyone or anything. It’s all in the public domain. It’s also enabled me to reflect on how far I’ve come since that diagnosis 2006.

When did you start to realise that there was life beyond your diagnosis? That the improving medication was changing our understanding of what a diagnosis meant?

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I was told I had two weeks to live when I was given my diagnosis. I guess 15 days after that, I started to realise that I was going to live longer and what that potentially meant.

To be honest, I’d spent two years of thinking I was going mad because I’d seen so many specialists and consultants and had so many tests, but none of them could tell me why I was gradually losing the use of my arms and legs, speech and memory. So when I was eventually given a diagnosis my overwhelming feeling was one of a relief — I wasn’t going mad, I wasn’t imagining it or making it up. But my future was still very uncertain and that uncertainty had a major impact on my mental well-being.

Although I was aware that HIV/AIDS no longer needed to be a death sentence, I was concerned about what the quality of my life may be. I was determined that if my quality of life were not what I wanted it to be, then there would be no life for me.

The experience of someone being diagnosed today is quite different from your experience in 2006. Why is your story relevant to today’s readers?

Although the treatment of the condition has made amazing progress in the 35 years since HIV first appeared, the levels of stigma surrounding the condition — certainly here in the UK — remain pretty much unchanged.

One of the consistent themes that runs through the contributions of the 13 other people in the book is the impact that that stigma has on their mental health. While HIV+ people may be living longer, healthier lives, we still have to be very aware of who may have that information about us and what they will do with it. The reactions we may get from people once they know can still be unpredictable, unexpected and, to put it mildly, sometimes very unhelpful.

There’s been no government-driven public campaign of information regarding this disease since the tombstones and the icebergs of the mid 1980s, and that was a campaign of fear, not education. That’s what people still remember — the fear remains, driven by ignorance. Fear creates the stigma, and stigma is the killer.

I’ve facilitated workshops for Terrence Higgins Trust for newly diagnosed gay men, and the one thing that’s common to all of them when they turn up for the first session is fear. Fear of the unknown. Fear of how other people will deal with their diagnosis. Fear of the loss of the life they were expecting to have.

We also have to remember that we are now seeing people who have been living thanks to the medication for a number of years. But nobody really knows what the long-term impact of that medication on the body will be.

Having lived through some of the most traumatic years of the epidemic, how do you feel about the changing landscape of HIV?

It’s a cultural shift. Undetectable = Untransmittable, or U=U, has only been around a couple of years, compared to the 30+ years where the message that condomless sex equals ‘risky’ behaviour — it takes time for the message to start to take hold.

Too many people have seen the impact that HIV/AIDS has had on the people they knew and loved and the very slow initial response to the epidemic — to be able to automatically switch off those feelings.

What do you hope that people feel when reading the book?

To recognise that HIV/AIDS hasn’t gone away, that it continues to have an impact. The message of this book applies not only to being diagnosed with HIV/AIDS but with any kind of life-changing condition.

I came up with the title, Ripples from the Edge of Life, because it’s not only the person who receives that diagnosis that’s impacted, but also the people around them — the ripple effect. People who have been diagnosed often feel very isolated, marginalised, and living life right on the edge.

As your life has progressed, do you have further chapters to write in this story, or are you turning your writing attention to other subjects?

I’m not a writer. I didn’t write this book with the intention of being seen as a writer. This book is about my life. I only have one life. For me, there will be no other books. But there are certainly many many more narratives of people living with HIV/AIDS to be told and I hope somebody else will take up that baton. Otherwise, who will tell our stories when we’re gone?

Ripples From The Edge Of Life is available on Amazon

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Arts & Culture

Photography that embraces naked men

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Arrested Movement by Anthony Patrick Manieri (image supplied)
Arrested Movement by Anthony Patrick Manieri (image supplied)

I caught up with photographer Anthony Patrick Manieri to talk about his ongoing series of work known as Arrested Movement.

Why do you think this project has captured the imagination of gay men around the world?

Because we’re all the same really, except we don’t all look alike. We usually just see what society deems to be the ‘perfect’ body types, flashed across TV and social media all the time.

This project encompasses a wide variety of men that are photographed equally and beautifully. I feel that the variety of men and body shapes being highlighted are recognisable to most men. We need to see diversity represented more in the media. That, and also the idea of male body positivity is refreshing in a world where the media seems to only push female body positivity. In this day and age, where depression and anxiety are extremely commonplace, it’s nice to know that we’re not alone in the struggle.

Why are men so keen to be photographed by you for this project?

Because we all want to fit in. We all want to be accepted, and here is a photographic series celebrating all men, all body types, and showcasing them artistically. I think men look at this and can relate and identify with some of the participating models, because they see themselves in the photos.

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Most of the men you’ve photographed for this project appear to be first-time models, most likely being professionally photographed naked for the first time. Was that experience confronting for many of your models?

From what I’ve seen, and from what some of my assistants mentioned to me, for most of the men that participate there’s a definite shift in their overall energy levels from when they first arrive at the studio to when they’re done. One assistant asked me — “What is going on in the studio? Because when they arrive they’re quite scared, some even shake with nerves, but when they leave they glow and have this sense of empowerment.”

I make sure that the studio is private and a safe space for them to try and feel as comfortable as possible. I brief them, and coach them with suggestions of possible body movement. I also stop periodically to show the gentlemen their progression so far in the shoot.

Most men, after seeing themselves on the screen during the shoot, are delightfully impressed by how they look. They look at themselves in a positive light artistically, and not what they usually expect to see. I talk to them about how their hands are positioned, their facial expressions, pointing of their feet, and the overall lines of their bodies in the frame.

When you’re not quite happy with your body, putting yourself out there is brave. I watch some men almost lose themselves in the moment and in the music. I’m grateful that I get to witness such a personal moment of self-evolution. For others, they’re determined to take an amazing photo, so they push themselves so that their final image is strong and unique.

Should everyone tackle a naked photo shoot at some point in their lives?

I don’t know if that’s the answer. What people should do is take time to appreciate and accept themselves, to put themselves first. Fill their own cups before extinguishing their energy with others. Uniqueness is special. It’s okay to look different on the outside, because we’re all the same on the inside.

How is the project continuing to evolve?

I’m currently working on the design of the book — I’ll be releasing a Kickstarter page this Fall. I’m also looking at gallery spaces to have the first of many shows.

Are you still actively shooting guys for this project?

I’m still actively photographing men. If it were up to me, I’d be in a different city every weekend photographing.

Since I’m funding this myself, I need to take breaks between cities. Travelling, studio costs, and hotels add up quickly. There are a few cities in the US, Canada, and Mexico that I’d like to do before heading back to Europe. Beyond that, there’s talk of Australia, and possibly some cities in South America for 2019.

How can we help each other feel better about our bodies?

I think we really need to be kind to ourselves, and each other — daily. Judgement and self-judgement is such a human flaw, it’s like a vibrational plague. We should be detaching ourselves from our smart-phones and social media regularly. Yoga and meditation are great ways to feel centred and grounded, to be in tune with our higher self. Eating right always makes for a happier body and mind. We need to encourage and validate each other to be the best we can be.

What do the images that you’ve captured through this project tell us about gay men and their relationship with their bodies?

Gay culture is meant to be inclusive, and we celebrate that inclusiveness. Though within the gay community, there’s such a divide between men. We’re labelled and put in categories, therefore creating almost a hierarchy of what’s acceptable.

Body-image and self-esteem start in your own mind, not on Instagram. We need to literally stop comparing ourselves to strangers on the internet. We need to make mental health a priority in the gay community.

I hope that when people see this project, they know their worth, they know that they’re beautiful, and that it’s okay to be different.

Meet the participants

Follow Arrested Movement on Instagram

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